The above phrase begins most important Jewish prayers because regardless of whatever else you are wanting to say, it is important to start by putting things in their proper context – and there are several things that I want to say, and that is the proper context for saying them.
First, on Jan 10th 2021 at 2:30am my beloved wife Janet Anne Porter passed from this world into eternity due to the actions of Huntington’s Disease. Note that I didn’t say, “…the victim of Huntington’s Disease…” because Janet was never a “victim” of anything. She may have lost the physical battle, but was spiritually victorious.
Second, though I am crying (copiously), now is not the time for just sadness. I also rejoice because while her body is cold and inert, I know that the part of her that was really “her” survived HD. And I don’t mean that in the soft sort of way that is common today, as in “…she will live on in our hearts forever…” While that is most certainly true, it is not what I mean.
Janet was far more than an amalgamation of biochemical interactions that other amalgamations of biochemical interactions (i.e. us) interpreted to be a “person.” For Janet, as with all people, there was also that part of her that wasn’t confined to the limits of her physical body, and because it is not dependent upon that body for its existence, it continues to live even as the body that housed it degenerates and dies.
Call that part of her (or you!) the spirit or soul – the label isn’t what matters. What matters is that it lives on and, as you read this, Janet is united with the One who created her and the spirits of all those friends and family members that have gone before her: people like her mother and father, her older brother John who also had HD, and her beloved godmother Aunt Ann whom she missed so much. And then there is the broader gathering of the faithful that The Apostles’ Creed simply refers to as “the communion of saints.”
No doubt she will be anxiously awaiting her other brother, Danny, who still has HD.
What all that reuniting looks like I have no idea, but I know and celebrate this: Janet’s mind is again clear, her hands and feet are steady, and she can now run and dance again to the tune that she, and not Dr Huntington, calls.
Third, I want to assure you, my readers, that just as Janet’s life did not end, mine did not either. As you might imagine, I may be “off the air” for a bit with family responsibilities and what not, but I am not going away. The work that my sister (with inspiration from God) set before me as a challenge, is far from done. We still have a very long way to travel together, and there are unfortunately new folks joining our solemn caravan every day.
If you wish to memorialize Janet and her contribution to the world, please make a donation in her name to the support and medical research organization for the disease that affects you, and which is active in your country.
…and please remember in your prayers those who are still fighting the good fight for the care and dignity of our families.
In Christ, Amen ☩
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A prayer for when you are confronting the end…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the reality of eternity. But today I want to bless You especially for providing for my loved one who now lives on in Your Divine Presence. Even though I cry now, even as You did when Your friend Lazarus died, I know that the grave does not have the final word and the doorway that we call death is not a corrupting, defeated end, but a glorious new beginning. Amen.”